Yesterday Kim had her appointment with the pulmonologist to look at her breathing issues that she has been having. I won’t give the whole back story, but if you’re not aware of what has been going on with her breathing you can catch up here and here. If we had to narrow how the overall appointment went into just two words, they would be “peaceful relief”. It was simply a fantastic appointment and not because we got a clean bill of health for Kim, but rather we had a doctor who was very honest with us, didn’t sugarcoat things, and wasn’t afraid to answer our questions with the truth.
So first things first, the pulmonologist confirmed 100% what we already thought. Kim’s breathing issues are related to her RAD. So she has joined those RAD patients whose disease becomes symptomatic in their lungs. There was no doubt in his mind that her RAD has affected her lungs and he was quite clear that this is not asthma, as was suggested by her rheumatologist. To us the real surprise of the appointment was that he gave us a diagnosis without running further tests, scans, or x-rays. He looked at her past x-rays, CT scans, and listened to her lungs and said everything looked and sounded fine, but that yes, her RAD is impacting her lungs. There are some further tests that could be done to confirm for sure what Kim has, but for now we are going to hold off on those. Just knowing that it is linked to her RAD and that we aren’t crazy was a relief. He then laid out best and worst case scenarios along with what tests we could choose to do and gave his recommendation as to how he wanted to treat her. After laying out what all of our options including his preference, he asked us which option we preferred. Very refreshing.
For now, she will be starting on a steroid inhaler to help with the breathing issues. He said that what Kim has is a disease that affects the lower portions of the lungs, but that it can often be helped with steroids. So yes, just as she is trying to get off of one steroid she is going on another. However, he felt that the inhaled steroids bring less of the negative side effects compared to oral steroids. He also told us that if or as her RAD goes into remission that her lung issues will too. So that is great news! Basically for right now we are treating it with the best way that we can with the information we have now and both Kim and I have perfect peace about it. He also recommended that she get a pneumonia vaccination as her lungs are compromised and pneumonia would not be a good thing.
As for the “Rice Krispies” crackle that she has in her upper throat, he felt that was possibly a separate issue and wants her to see an ear nose and throat specialist to see if there is any swelling or inflammation near her larynx. If there is, that will need to be treated as well otherwise she could lose her voice. See here for more information about that. She has scheduled a followup pulmonary function test in two months and will also see the pulmonologist immediately after her PFT to see if there are any changes.
We are thankful for God answering our prayers by providing us with a doctor who was knowledgeable, forthright, and willing to hear our questions and opinions. We are grateful for God’s grace that brings peace and comfort even as we deal with this disease. In closing, my favorite passage of Scripture seems appropriate.
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. —
2 Corinthians 4:16-18 ESV